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Thread: Father with AML relapse nearing end of life. What to expect?

  1. #1
    Newbie New User
    Join Date
    Nov 2018

    Father with AML relapse nearing end of life. What to expect?

    Hi all — this is my first time posting here. I joined, as my father is nearing the end of his life and my mom and I aren’t completely sure what to expect.

    He first developed AML as a mostly healthy 57 y/o man and was admitted to the hospital for induction in early December 2016. It was caught very early on and completely by accident (during his annual CDL license health check) and he hadn’t even started showing symptoms yet. I think they may have given us a stage I diagnosis or possibly even less than stage I. I don’t recall. But nonetheless, given the cancer’s lack of development, chemo was a success and he was in complete remission by March-ish. The chemo had certain effects on him though, including a general fatigue and a few other minor things. So while he was cancer free, he had some “off” days where he wouldn’t feel 100%, generally, over the next 1.5 years.

    About 3 weeks —> a month ago, he started feeling pretty crappy. Crappier than usual. At first it was just a nasty cough, which a doctor confirmed was bronchitis. But, even with medicine, he couldn’t totally shake the debilitating cough. I warned him gently, “you know, I wouldn’t wait forever. you should see a doctor sooner rather than later”. He told me he knew that, and that he would.

    Fast-forward a couple of days, and the pain begins. An aching, at first, localized in his arms, which worsened with time. My mom took him to the ER where, eventually, the worst case scenario became reality. His AML has relapsed, this time with a mutation that makes it even more aggressive than its usual level of aggression.

    The hospital gets control of his pain, finally, and tells us that a bone marrow transplant will be necessary. With Chemo alone, there’s a very high chance of relapse again. Even with a bone marrow transplant, there’s a high risk of a disease where the body rejects the new marrow, or whatever, and you die.

    No, no, he wouldn’t be having any of that. “Oh, well there may be clinical trials available. We can loo—“ nope. He decided he’d like to come home, and get comfy. He’s done with it all.

    He’s been home for about 10 days now, maybe two weeks. I live in a big city where I go to college, but I’ve moved back to my parents’ house and have been commuting to classes 3 days a week so that I can be with my dad at every possible moment. My mom takes him for platelets and red blood twice a week. It’s scary, what untreated, aggressive acute myeloid leukemia can do to someone in just 10 days. Food, mostly all of it, tastes like absolute rubbish (no, I’m not a Brit). His taste buds have hit rock bottom. Starting about 3 days ago, most things he ingests come back up within a half hour. This includes pills, the medications he needs. This includes fluids. He’s constipated. He’s definitely dehydrated; I don’t see how he couldn’t be.

    He and my mom are traversing the snowstorm this afternoon to get him platelets and blood and, hopefully, fluids.

    Anyway, bless you if you’ve read this whole thing. My mom and I are upset, of course, and we have our good and bad moments. I had my first panic attack last week. We’ve both been on a very light dose of Xanax, as needed. But, we’re not immobilized by the ordeal, by what’s impending. We have a great familial support system and each other.

    So, I guess this is my question: to anyone who has dealt with impending death of a loved one with leukemia (or any cancer), what should we expect? More than anything, it’s a fear of the unknown for my mom and I. Well, me anyway. I’ll speak for myself. How will he go? In his sleep? Will it be in extreme pain? At what point did you involve a hospice team/service if at all? As an estimated timeline, his doctor(s) said “weeks”. This was two weeks ago. They were certain it’d be before Christmas. And of course, I understand that no two cancer experiences nor two bodies are alike. I guess I’m just looking for a rough idea of what to expect in his very last days. I think it may help alleviate any potential shock factor.

    Thanks again for reading and best wishes to all —

  2. #2
    Moderator Senior User IndyLou's Avatar
    Join Date
    Jan 2014
    Hello, sunflowers-

    I'm very sorry to hear of your story with your father. I don't know the specifics of AML, but 60-ish is far too short a life.

    You seem to be handling all of this in a very rational way, and I'm so glad to hear that you have your family to support each other. You also seemed to have accepted your father's decision, because ultimately, he is the patient. Only he knows what he can handle in terms of treatment and pain.

    If you have not yet pursued it, I would seek some kind of in-home hospice care. I knew a woman who died of metastatic breast cancer just over a year ago, and she has such an arrangement. The idea behind the hospice is to make the patient's life as comfortable as possible. An in-home hospice care allows the dying patient to be with his loved ones, in a comfortable setting.

    As for your father, it's difficult to say how quickly he may go. If he's unable to eat, that will become a problem, quickly. There should be a way to treat any pain using injectable pain medication, but without nutrition, the body goes quickly. As you pointed out, what's quick for one person isn't always so for someone else.

    There are many resources available, but I am including the following that could be of some help for you.


    Please know that you are welcome here--to ask questions or vent. We are a supportive group. I'll be thinking of you and your father, and praying for him.
    Age 52 Male
    early Feb, 2013 - Noticed almond-sized lump in shaving area, right side of neck. No other "classic" cancer symptoms
    late Feb, 2013 - Visited PCP for check-up, PCP advised as lymphoma. Did blood work, orders for CT-scan, referred to ENT
    3/7/13 - CT-scan inconclusive, endoscopy negative
    3/9/13 - FNA of neck mass
    3/14/13 - Received dx of squamous-cell carcinoma, unknown primary
    3/25/13 - CT-PET scan reveals no other active tumors
    3/26/13 - work/up for IMRT
    4/1/13 - W1, D1 of weekly cetuximab
    4/8/13 - W1, D1 of IMRT
    5/20/13 - complete 8 week regimen of weekly cetuximab
    5/24/13 - Complete 35-day regimen of daily IMRT
    mid-July 2013 - CT-PET scan reveals no active tumors, but shows necrotic tissue at site of original tumor
    early Sept 2013 - partial neck dissection to remove necrotic tissue. Assay shows no cancer present.
    Spring 2014 - No signs of cancer
    Spring 2015 - NED
    Spring 2016 - NED
    Spring 2017 - NED
    Spring 2018 - NED
    Spring 2019 - NED

  3. #3
    Super Moderator Top User po18guy's Avatar
    Join Date
    Feb 2012
    I am also saddened to hear this. Hospice is a very good thing, and designed to make his days as comfortable as possible. Do check into that - the sooner the better. As to tnhe end, leukemia slowly takes over the blood supply, at some point eliminating his ability to fight infection. Recently and famously, Paul Allen died - not of lymphoma, but of sepsis, his body's inability to fight infection off. I would imagine that multi-organ failure or sepsis would be the likely end of life for leukemia patients.

    Still, good on you for spending as many momonts with him as possible. This is to your credit. Fond memories, and the love of your dad will never die. They are locked in your heart.
    05/08-07/08 Tumor appears behind left ear. Followed by serial medical incompetence on the parts of PCP, veteran oncologist and pathologist (misdiagnosis via non-diagnosis). Providential guidance to proper care at an NCI designated comprehensive cancer center.
    07/08 Age 56 DX 1) Peripheral T-Cell Lymphoma-Not Otherwise Specified. Stage IV-B, >50 ("innumerable") tumors, bone marrow involvement.
    08/08-12/08 Four cycles CHOEP14 + four cycles GND (Cyclofosfamide, Doxorubicin, Vincristine, Etoposide, Prednisone & Gemcitabine, Navelbine, Doxil)
    02/09 2) Relapse.
    03/09-06/13 Clinical trial of Romidepsin > long-term study. NED for 64 twenty-eight day cycles, dose tapered.
    07/13 3) Relapse, 4) Suspected Mutation.
    08/13-02/14 Romidepsin increased, stopped for lack of response. Watch & Wait.
    09/14 Relapse/Progression. Visible cervical nodes appear within 4 days of being checked clear.
    10/06/14 One cycle Belinostat. Discontinued to enter second clinical trial.
    10/25/14 Clinical trial of Alisertib/Failed - Progression.
    01/12/15 Belinostat resumed/Failed - Progression. 02/23/15
    02/24/15 Pralatrexate/Failed - Progression. 04/17/15
    04/15 Genomic profiling reveals mutation into PTCL-NOS + AngioImmunoblastic T-Cell Lymphoma. Stage IV-B a second time. Two dozen tumors + small intestine (Ileum) involvement.
    04/22/15 TEC (Bendamustine, Etoposide, Carboplatin). Full response in two cycles. PET/CT both clear. Third cycle followed.
    06/15-07/15 Transplant preparation (X-rays, spinal taps, BMB, blood test, MUGA scan, lung function, CMV screening, C-Diff testing etc. etc. etc.) Intrathecal Methotrexate during spinal tap.
    BMB reveals 5) 26% blast cells of 20q Deletion Myelodysplastic Syndrome MDS), a bone marrow cancer and precursor to Acute Myeloid Leukemia.
    07/11-12/15 Cyclofosfamide + Fludarabine conditioning regimen.
    07/16/15 Total Body Irradiation.
    07/17/15 Moderate intensity Haploidentical Allogeneic Stem Cell Transplant receiving my son's peripheral blood stem cells.
    07/21-22/15 Triple dose Cyclofosfamide + Mesna, followed by immunosuppressants Tacrolimus and Mycophenolate Mofetil.
    07/23-08/03/15 Marrow producing zero blood cells. Fever. Hospitalized two weeks.
    08/04/15 Engraftment occurs, and blood cells are measurable - released from hospital.
    08/13/15 Day 26 - Marrow is 100% donor cells. Platelets climbing steadily, red cells follow.
    09/21/15 Acute skin Graft versus Host Disease arrives.
    DEXA scan reveals Osteoporosis.
    09/26/-11/03/15 Prednisone to control skin GvHD.
    11/2015 Acute GvHD re-classified to Chronic Graft versus Host Disease.
    05/2016 Tacrolimus stopped. Prednisone from 30-90mg daily tried. Sirolimus begun. Narrow-band UV-B therapy started, but discontinued for lack of response. One treatment of P-UVAreceived, but halted due to medication reaction.
    09/16/16 Three skin punch biopsies.
    11/04/16 GvHD clinical trial of Ofatumumab (Arzerra) + Prednisone + Methylprednisolone begun.
    12/16 Type II Diabetes, Hypertension - both treatment-related.
    05/17 Extracorporeal Photopheresis (ECP) begun in attempt to control chronic Graft-versus-Host-Disease (cGvHD. 8 year old Power Port removed and replaced with Vortex (Smart) Port for ECP.
    05/2017 Chronic anemia (low hematocrit). Chronic kidney disease. Cataracts from radiation and steroids.
    06/17 Trying various antibiotics in a search for tolerable prophylaxis.
    08/17 Bone marrow biopsy reveals the presence of 2% cells with 20q Deletion Myelodysplastic Syndrome, considered to be Minimum Residual Disease.
    12/17 Bone marrow biopsy reveals no abnormalities in the marrow - MDS eradicated. The steroid taper continues.
    01/18 Consented for Kadmon clinical trial.
    03/18 Began 400mg daily of KD025, a rho-Associated Coiled-coil Kinase 2 Inhibitor (ROCK2).
    09/18 Due to refractory GvHD, Extracorporeal Photopheresis halted after 15 months ue to lack of additional benefit.
    10/18 I was withdrawn from the Kadmon KD025 clinical trial due to increasing fatigue/lack of benefit.
    11/18 Began therapy with Ruxolitinib (Jakafi), a JAK 1&2 inhibitor class drug. Started at half-dose due to concerns with drug interactions.

    To date: 1 cancer, relapse, second relapse/mutation into 2 cancers, then 3 cancers simultaneously, 20 chemotherapy/GVHD drugs in 11 regimens (4 of them at least twice), 5 salvage regimens, 4 clinical trials, 5 post-transplant immuno-suppressant/modulatory drugs, the equivalent of 1,000 years of background radiation from 40+ CT series scans and about 24 PET scans.
    Both lymphoid and myeloid malignancies lend a certain symmetry to the hematological journey.

    Believing in the redemptive value of suffering makes all the difference.

  4. #4
    Newbie New User
    Join Date
    Nov 2018
    Indylou and po18guy, thank you so much for your kind words. Surprisingly (in a good way) for us all, it's been three months since my first post and my dad is still with us, albeit only barely. He had enough weight (something like 320 lbs) on him in the beginning that his not eating much really wasn't a problem. He's dropped to about 240-250 now. He's extremely weak and was unable to muster the strength to make it to the hospital today for his infusion. His gums have been bleeding a lot all day and he has blood marks (red dots, I forget their name) all over his calves. He very obviously needs platelets and red blood TODAY, though he requested that we reschedule for tomorrow. He told my mom this morning that he believes his end is near. For leukemia patients (at least with our hospital), going on hospice means that you no longer receive red blood and platelet transfusions, so naturally it's something my dad has been avoiding for quite some time. Even hearing the word sends him into a fit of denial. He wasn't ready for hospice for quite some time (3 months!) But, his condition is clearly deteriorating now - fast. And we doubt he'll be feeling strong enough for his appointment tomorrow, either. We think this is it.

    It's strange. I've had months to digest everything, which I think i've done pretty well. I was never close to my father on any serious level - though this process has still been difficult, especially when the care receiver is a very stubborn and largely self-centered person. But, I love him nonetheless. I don't know who's listening to this, but it feels therapeutic to vent. So thanks, whoever you are!
    December 2016 - Father diagnosed with stage I AML
    January 2017 - Complete remission following initial induction
    October 2018 - AML relapse with 82% blasts and FIT3-ITD+ mutation. Refusal of treatment.


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